Newbie looking for hope, help and support...

[tommyboy]

I am a father of two vibrant kids (ages 8 and 10), happily married to my beautiful wife (my rock) with a great career. I am 41 years old and wore glasses (and contacts) since the 3rd grade. I am very active (like to run, swim, bike, snowboard, etc.) and last June while standup paddle boarding in Cape Code, I lost my glasses. That day seemed to have changed my life. I was tired of wearing glasses and contacts bothered me most of the time. I was always reluctant to get LASIK as I was dreadfully fearful that I was going to be one of the 1% that just went wrong. My wife had the surgery 6 years ago with the same surgeon - so I finally put my fears aside and got LASIK (custom view) done in mid September. I now realize that was the worst decision of my life and I desperately want to wake up from this nightmare I seem to be living.

The day after the surgery, when I woke up - I was sick to my stomach. I knew something was wrong. Not only did my eyes hurt, I could not see, lights were horrible and the computer and the TV where like the death star. I had to work the following day, staring at my computer in my basement with the lights off wearing a pair of sunglasses. It was horrible.

The first 2 - 4 weeks were extremely painful and the worst part. After one month they put me on Restasis, which I have now been on for 3 1/2 months. I believe it has helped....

Things seem much better than they did 3 months ago. Three weeks ago, I thought I was really on the mend ... it seems as if I have some really good days, then take a step or two backwards. I have days where I am like...yahoo! finally I am getting better. Then I have a bad day or a couple bad days - and it is literally like a slap in the face.... which is mentally draining.

I got terrible depressed and saw a couple doctors. I am now on Klonapin twice a day for the anxiety and Remeron to help me sleep and get my appetite back again (I lost 10% of my body weight).

Sorry for such a long post.... I am trying

I know my condition is much better than others in this forum. I believe my condition is "mild". My TBUT is 5 seconds, it was 10-12 before the surgery.

In addition to seeing my LASIK OD (a dozen times), I have seen a corneal specialist (not affiliated with the LASIK center) and two other eye doctors (MD). They all tell me the same thing. The procedure went very well. Flap is perfect. Cornea is perfect. And I am dealing with normal dry eye in the normal healing period. AND getting through this winter (your first winter) will be tough and once you are through it you will be back to the way you were.

I was -4.5 in both eyes. I am now -1.0 in the left and -0.5 in the right. So I am back to wearing glasses again.... which I am completely fine with and have come to terms with. To tell you the truth, wearing glasses again has made a HUGE difference, because for the first three months I thought my right eye was blurry from being dry. It was NOT... it was because I could not see as well as I used to see.

My eyes feel very dry, worse as the day goes on. They burn most of the time, especially after working all day (on the computer). They burn after the Restasis at night (but not in the morning).

I have semi permanent plugs in the lower lids. I do daily scrubs. I try to work out 3 -5 times per week. I sleep between 8 and 10 hours a day. I can not sleep with the help of the Remeron (and my eyes are no longer on fire at night).

Again, sorry for the long post and the rambling. Just trying to describe my situation.

I run three humidifiers in the house - I work from home most of the time.

Here are my main questions:

Is there still hope for me to lick this in the "normal" 6 month healing period?

Am I worrying to much at this point? The anxiety is killing me (and hurting my family as well)

Is it true that after this first winter I will be fully healed as the doctors keep telling me?

I look forward to responses and thank those in advance who try to help me. I will say additional prayers for those that are worse off than I am.

Lastly - I have been very reluctant to read posts let alone write one. Because, frankly some of the things I read REALLY scare me. But I am at the point were I need to come to terms with this condition. And I do not know where else to go for help.

Thanks,
Tom

[Guest]

Hi,

So sorry to hear that you're going through this...

Not sure how good your doctors are with dry eye, but it wouldn't hurt to check out the chapter on management of dry eyes in the DEWS report:

http://www.tearfilm.org/dewsreport/p...DEWS-noAds.pdf

It might help with some ideas on treatments that you haven't tried yet. Also, it's a report that is referenced by major treatment guidelines, so if you brought it along as a reference when asking your doc about a treatment in it, the doc should be receptive since it is a reputable source of info.

Not sure how good your doc is with meibomian gland dysfunction - a lot of us have it and it causes all kinds of discomfort due to the poor tear film that results.

I use this mirror to keep an eye on mine: http://www.amazon.com/Zadro-Extreme-...7590640&sr=8-1 It magnifies them enough that I can see what they look like and whether or not any treatments I'm using are helping them - my doc checks them at each visit too, but since I only go now every 6mo to a year, a lot can happen in between, and I like to know for sure how they are doing.

If you're not sure what meibomian glands are, you can goodle meibomian gland dysfunction, plus look on youtube... after a while you'll get a good feel for what is normal, and what is not normal.

Kids are waking up... gotta go!!

[Rebecca Petris]

Hi and welcome. I'm sorry for what you're going through.

I hope you're not blaming yourself for choosing LASIK. You had every reason to believe it was a reasonable decision.

You said that your doctors said this:

I am dealing with normal dry eye in the normal healing period.

And yet everything you describe here:

The day after the surgery, when I woke up - I was sick to my stomach. I knew something was wrong. Not only did my eyes hurt, I could not see, lights were horrible and the computer and the TV where like the death star.... It was horrible....

The first 2 - 4 weeks were extremely painful and the worst part...

My eyes feel very dry, worse as the day goes on. They burn most of the time, especially after working all day (on the computer)...

I have semi permanent plugs in the lower lids...

IS NOT NORMAL. PERIOD. The whole reason LASIK shot to popularity in the 90s was because of the pattern of little pain, fast healing and quick visual recovery.

Everything your doctors said (smooth procedure, good flap, good cornea) may be perfectly true. And clinically, you may have "mild", normal, post-operative dry eye. But it is so obvious from your post that your symptoms were/are anything but normal! and in my opinion, it is insulting for a doctor to tell you you have "normal" post LASIK dry eye when you are experiencing such symptoms, unless they may a point of distinguishing between "signs & symptoms". It is very important for all dry eye patients but especially those with clinically mild-moderate clinical signs (test results) to learn to quantify their symptoms (that is, what you are feeling/seeing) using one of the questionnaires such as OSDI or IDEEL and present them to the doctor because unfortunately too many of them aren't going to help you do that, though any doctor worth his salt in dry eye ought to.

OK I'm done ranting, for now

To tell you the truth, wearing glasses again has made a HUGE difference, because for the first three months I thought my right eye was blurry from being dry. It was NOT... it was because I could not see as well as I used to see.

I lied. I'm not done ranting. SHAME ON YOUR DOCTORS, every one of them who saw you in the first three months, if they did not tell you YOU HAVE REFRACTIVE ERROR causing your blur. LASIK doctors can sometimes be so focused on highlighting your improved UCVA that they fail to acknowledge, or even test for, presence of residual refractive error. (that's uncorrected acuity, i.e. vision without glasses, and prescription remaining after surgery, respectively). One of my biggest pet peeves is that even when the subject comes up often doctors discourage the use of glasses in the first months, for no sound medical reason but just because they don't want you to think the surgery was a failure.

They burn after the Restasis at night (but not in the morning).

If you're not already, try buffering by using a mild artificial tear or saline 5-10 minutes before applying.

Is there still hope for me to lick this in the "normal" 6 month healing period?

Absolutely. I know people who had BAD dry eye initially and got better surprisingly fast. Just, for your sanity's sake, continue to allow for the possibility of the longer course of 'unusual' post lasik healing, otherwise every benchmark (6 months, 9, 12, 15 if applicable, etc) becomes a misery of anticipation.

Am I worrying to much at this point? The anxiety is killing me (and hurting my family as well)

What is too much? All worry harms us - but knowing that does not help us stop. Be kind to yourself. Your doctors talk about 'normal'. I'll tell you what normal is. Normal is for a person whose eyes burn "most of the time" after a surgery that was supposed to be quick & easy, to be depressed and anxious. I don't think any member here who has been where you are has escaped it. So be kind to yourself, give yourself time, build up the support, if possible rally some support here from people you could get in touch with real time (phone, email etc). Try not to give yourself too much grief over what this means to your family. It's OK for them to see you go through this and come out the other side intact (YOU WILL!) even if it takes awhile.

Is it true that after this first winter I will be fully healed as the doctors keep telling me?

Your doctors are speaking clinically about the flap and epithelium when they say this. They're not talking the language of either the tear film or the tear system in general (including the MGs SAAG refers to), much less the language of pain. In their terms, yes, you'll be healed (you may be now). In our terms, we just don't know. But we hope.

Lastly - I have been very reluctant to read posts let alone write one. Because, frankly some of the things I read REALLY scare me. But I am at the point were I need to come to terms with this condition. And I do not know where else to go for help.

Don't read horror stories here. It's truly harmful. If you do read them, make room for a lot of context. Many of them are written by people who are now fine (I mean not necessarily perfect but managing fine, have their lives back). If I can be of any help personally just call.

Speaking of long posts...

[Guest]

Back now

Rebecca is sooo right! She gives awesome advice!

What Rebecca said about your symptoms not being normal is so true... best to get the best treatment possible now to prevent things from worsening, and jump-start any improvements that are coming your way.

If your docs are open to trying some of the treatments in the DEWS report that you haven't tried yet, then that's great. If your docs are not interested in trying things to help you, or condescending about it, then switch docs. A corneal specialist is typically the kind of doc you'd need to see.

This is not exactly a perfect approach to finding a doc, but I kind of like ratemds.com - if there are lots of reviews, in my experience, they tend to be fairly accurate in terms of what to expect from a doc... not foolproof, I know... but just saying if you get referred to a new corneal specialist who has 20 reviews and every single one says he/she is horrible, then maybe try to see if you can get the referral changed to someone else so you don't end up wasting your time with someone who is less than ideal.

For the mental side of things, try your best to not allow yourself to think of all the scary what'if's... it'll just bring you down. Distract yourself with fun stuff as much as possible - I remember back when I was at my worst and my eyes hurt every frigging minute... wasn't feeling like going out with such sore eyes - my hubby said that if they'll hurt no matter what I do, I might as well go out and at least be distracted from it - he was sooo right!

If your eyes are burning and drops aren't soothing enough, try splashing ice cold tap water over closed eyes as often as needed (dry well before you open them... getting water in sore eyes doesn't feel so good) - at my worst I'd do this every 1/2 hour or more sometimes since it felt sooooo good, and reduced the redness! Some people find just cool water feels better... experiment to see what you like best.

When you can, give your eyes a rest and listen to an audiobook or something... not sure if you like to read, but if you do, audiobooks are a great eye-friendly alternative - I listen to mine on an ipod touch, but there are other options too (maybe save your eyes the research and ask your wife to look into it for you) - Where I live, audiobooks are downloadable for free from our on-line public library... I've also bought several from audible.com

Hang in there!

[tommyboy]

Rebecca and SAAG - THANK YOU so much for replying to my post. Thanks so much for taking the time to read, interpret and provide some advice. Right now my day consists of waking up, taking a couple pills, putting in restasis, having a cup of coffee then sitting in front of my computer for 7 hours or more for work (at least I work from home mostly and I try to take breaks). I put drops in during the day (which never really provide any relief) ... I read somewhere on this site last night about putting in the drops and letting them settle in your eyes for 2 minutes or so - I started doing that today (I think it may help). Anyway, after work I muster up some energy to get a work out in (I think it helps). Eat dinner, then look forward to taking a couple more pills (fish oil and dose of klonopin and then remeron before bed) having a cup of tea and I look forward to just going to bed (I guess I am lucky, my eyes no longer burn at night - and I feel for others that do not get any relief).

So again THANK you for your reply's and advice. I really need to think about what you wrote and what to do next. I think I am stuck in a bit of a vicious little circle, filled with anxiety. I used to enjoy reading (now its a struggle) - so I will start trying the audiobook (I have a few CDs from a friend).

Thanks again.

[tommyboy]

SAAG,

Thanks very much for the information. I downloaded the PDF today and printed the section you mentioned, and I started reading it. I have not finished it yet, but plan to this weekend (I think). So far my docs, seem to have me on the standard treatment path. Drops, plugs, Restasis and now meibomian glands ... they asked me to not go crazy, but warm compress in the shower and I also got the over the counter wipes (Occusoft). My wife has one of those mirrors, and I looked closely today and I do not see any real problems. I still think the warm compress in the morning and the shower helped today.

Anyway - thanks for the help. I am not sure how exactly these forums work, if I am supposed to reply to the thread or back to the person? I guess I will try both...

Thanks again!

[tommyboy]

Rebecca,

I have tried your suggestion of "buffering" last night and today and I think that does help. Tomorrow I am going to buy some saline and take that suggestion as well.

I do want to clarify a few things in my post. Although, I am not thrilled that I am wearing glasses again (I actually have 3 pairs and am waiting for prescription sun glasses - I am not blaming anyone (doctors) for what happened. I am not sure the under correction was a result of my surgeon doing something wrong or it's just how my eyes seem to be healing. I am fine either way ... I gave it a shot, I have to wear glasses and I accept that. And if I can get past the dryness/burning stage I will be... I am not sure what I will be - there are no words to describe it - blissful, myself, happy - perhaps once again.

Also - I want to further explain the first 4 weeks of pain, and no tolerance for any source of light (the death star). My understanding is that there is an additional complication associated to customer view LASIK - when they make the flap with the laser vs. a blade. And that process, I am told are like mini explosions on the eye, and sometimes (for unknown reasons) some patience shortly afterwards are extremely light sensitive due to inflammation. And for whatever reason, that seemed to take 4 weeks. But the light sensitivity is now gone and that process is, from my understanding, completely separate from the dry eye... which is due to the severing of the nerves.

What I do not get is why some people (like my wife) heal within a day, completely and others like me they say takes time. AND I cannot grasp why some days are better than others, that drives me crazy. And I keep a daily log of what I do (every half hour) in terms of what I do to my eyes.

I agree with you, all the doctors I saw should have let me get my glasses earlier instead of shunning me away from them. How is -1.0 in my left eye and -.5 in the other eye good vision when I was used to seeing 20/20??? Without my glasses, things just look awful.

So where do I go from here... not sure. I printed off a lot of information from your site (diagnosis of dry eye, how to get better care from your doctor, dry eye treatments, how to start feeling better and coping better, and how to find a better dry eye doctor). So far I skimmed them, but planning on reading all the material to put an action plan together.

Lastly, I want to say that simply writing these posts (even if they are not read or responded to) seem to help me. So thanks again for listening.

I know I am probably in far better shape then many others on these forums, and my heart and prayers truly go out to them every day.

I am ending today and this (work) week on a happy note and will sleep in peace tonight

Thanks again,
Tom

[Sammy B.]

Tom,

You are not out of the woods yet so don't panic. There's plenty of time for you to feel better, but stressing out over when that will happen is probably causing more harm than good.

Stress causes aches and pains all over your body, so there is no doubt that by stressing you are probably exasperating the eye pain.

IF things have not improved by the one-year mark, try looking into doctors who can tell you if your meibomian glands are clogged or if you have a low tear production, or exactly WHAT is causing the pain. I would avoid going to the LASIK surgeon. LASIK alone most likely is not the cause of the problem - there is a reason why people like your wife have LASIK and do fine and people like us have LASIK and don't.

In my personal case, I have meibomian gland dysfunction or "MGD." I manage through a daily routine of hot compresses + massage, oral doxycycline, genteal gel at night, and an overall healthy diet with some exercise sprinkled in.

It's all manageable. Don't fret. Just try to take it one day at a time and go easy on yourself.

Rose

[tommyboy]

Rose - THANK YOU for MAKING the time to reply. I must admit, I am VERY stressed. I took the kids (school function) ice skating yesterday. For the most part, I had a good time. Eyes were OK. But then after an hour on the ice, deep anxiety set in, and it is VERY hard to explain. My eyes were not killing me. They were just not right. They felt like junk. I went to the bathroom, put my drops in and tried to continue skating. We left the rink shortly afterwards and I drove home. I do not know why, but I felt sick to my stomach. So hard to explain. I got home, and was a mess. Sat at the dinner table for 2 minutes, then had to get up and leave the table so my kids would not see me literally break down. I cried like a friggin baby for like 10 minutes. So, yes I am stressed out. I took some xanax, took a shower, had a cup of hot chamomile tea....

I am so distraught, that I ruined my life ... and I tell myself over and over and my family keeps assuring me that I didn't.

I do not know why this is so hard. I was never like this ... I just feel broken. I am trying to work today - which is hard.

I just did a hot compress with a small towel (my eyes for the moment seem to not be burning). My wife is getting me some rice for the stocking trick as I am hoping that will really help me. And she is getting me some saline.

I am also trying to see my head doctor this week to maybe change my prescription as I am just so depressed and cannot seem to get out of this hump I am in. And I feel so stupid ...

So - I again thank you and I AGREE with you. I know the stress makes it worse ... I am trying (not much luck) to make it better.

Regards,
Tom

[cafe41]

Hi Tom!

I felt compelled to respond to you because your story is very much like mine. I had Lasik 9 months ago and SLOWLY improved starting around month 6 and 7. For the last few weeks I hardly ever use drops durning the day. My eyes are mildly dry and very tolerable. I still use Refresh PM and goggles a couple hours at night and use drops if I wake up in the middle of the night and in the morning. I'm planning on switching to a sleep mask and drops soon.

I no longer use gel drops, Restasis, fish oil, humidifier or compresses. I do drink a ton of water but always have. I think coconut water is a good way to rehydrate as well.

I suffered terrible anxiety, weight loss (gained back), guilt, regret etc. I am so much better and thankful for my progress. I really believe the number one thing that helped me is TIME. I know it is very hard to wait for months to improve but just know there is hope. Wishing you a speedy recovery and peace of mind!

One more thing...try not to read all the horror stories online. It can really cause unnecessary worry and make you paranoid! The triumph forum on this website has some success stories that I found encouraging.

[tommyboy]

Cafe41 ... Thanks very much for your reply. Your encouragement made my day (although my eyes are burning right now as a write this).

I think it is very important for those that have some success to make the time to help those still in distress It's people like you that can make all the difference in the world to someone like me.

And I am hopeful, that I too will be back in this forum helping others as they cope with their ordeal.

Thanks again!

[Sammy B.]

Tom,

It is probably so hard for you to get your mind around this right now but I can tell you that it can and will get better. How you feel now is not always how you will feel forever.

I too had meltdowns after I realized the severity of the situation. I went on and am still currently on Ativan 0.5 mgs twice a day. I don't need any sleeps aids with this medication. It calms the nerves througout the day so that I don't need any help getting to sleep anymore.

Something to remember about Xanax is that it is only for the strictest of anxiety issues or "panic attacks," not just for overall nervousness. Xanax did not work for me and I believe caused me more anxiety issues. Are you seeing a good doctor who can explore other meds for you? Perhaps something for overall "nerves" would be better than the rollercoaster that is Xanax. Just a thought.

If you work alone and from home, get a pair of moisture chamber glasses. Start cheap with the onion goggles from this website and wear them when you are computing. After about a half hour you will probably experience some relief from the burning.

Rose

[Hopeful2]

Hi Tom,

If you check under the notifications box you will find a private message that I sent you. Many here have said what I mentioned in my message. . . sometimes it helps to hear the same message from lots of different people.